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Thread: Sami's story

  1. #1
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    Default Sami's story

    Hi...i was diagnosed about 3 months ago by a "rhumy doc' as you all tend to call them. But I , like LOTS of you have multi issues. I have RA, lupus, sjogens, reynaulds,and hashimotos. I have not posted previously cuz i am just trying to learn by reading everones posts. Hate to whine, but looks like this is the place to do it due to the seemingly great support! I feel so alone, or I guess I have felt so alone till now. I have been looking for a place for support from people who understand and looks like I have found it.

    I have been dealing with my symtoms for allmost 3 years now. Mine started with severe scleritis. My eye doc put me on steriod eye drops and and i saw him every day for a week. He totally scared the crap out of me. after 3 days I asked him why I was seeing him so often. He said well your eye pressures are REALLY high and that can make you go blind and by the way so can these drops. He then refered me to a specialist (eye). This new doc first mentioned lupsus to me back then. He put me on Prednisose back then. My eyes calmed down and was symtom free for about every 6 months. Then I would have a "flare" was put on short course of pred. for a couple of weeks then would be symtom free for several months. This Sept. got a sunburn staining my deck and holy hell the ball has not stopped rolling. Can't get my symtoms under control yet. Saw the rhumy doc in Oct. he put me on methotrexate pills. Bout killed me. Stomach could not take the 60 mil he perscribed so went to 2 mg, then 3, then 4, and so on till we worked bach up to 6. I had gained about 12 pounds in the last 3 moths trying to control the severe stomach pain. I saw the rhumy in Nov. and I said enough< I can't do this any more. Lets try the shot so I have. Have given my self 3 now with much better results. Minimal stomach upset. Still feel poisoned days after but stomach is MUCH better and I have lost 8 pounds! Caught a cold and could not do my shot last week so another step back! Frustrating! Have not gotton on top of the flare YET!!!!!!!!!! And still on the prednisone too! If I try to get off my eye pressures go up and I can't funtion. Would REALLY like NOT to go blind from this. Also on 3 different eye drops to try to control the pain and sweeling. And of couse thats just the eyes. I also have a galaxy of other lupus symtoms like you all do but most troubling is the eyes. Thats me in a large nut shell!! Hope this let's you know enough! Look forward to getting even more info from this group, love the support! thanks for reading/listening...
    Last edited by sami29; 12-29-2011 at 09:24 AM. Reason: spelling errors

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    steve.b (12-29-2011)

  3. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Sami,

    Welcome to WHL!

    Please make yourself at home.

    Rob

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    sami29 (01-01-2012)

  5. #3
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    Hi Sami,

    Yes, you have found THE place.
    Welcome to WHL, glad you have found us.
    I am sorry, that you have so much trouble with your eyes. Hopefully the doc can help you soon.
    Of course I don't know that for sure, but I think there is a possibility, that the Methotrexate will take care of your eye problems, if it is Lupus related. But like I said, that is just MY guess.
    I also have Lupus, RA, possible Sjoegrens, Raynauds ( mild) and Fibro. Sometimes it is overwhelming, mostly in the beginning, but now five years after my diagnosis, I am dealing with it and it doesn't scare the heck out of me anymore.
    If you have any questions, somebody is always here to answer.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    sami29 (01-01-2012)

  7. #4
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    Hi Sami,
    Welcome to WHL. This is a great place for information and support.
    I hope that the MTX gets everything under control for you.
    I look forward to seeing you here more often.
    Hugs,
    Marla

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    sami29 (01-01-2012)

  9. #5
    Join Date
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    hello sami welcome whl look forward to getting to know you hugs

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    sami29 (01-01-2012)

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